Monday, April 13, 2015

A Stranger in Strange Lands

Way back in the summer of 1989, just about a month before my 26th birthday, I unintentionally found myself living in South Florida. An unfortunate confluence of bad decisions on my part, ill will on the part of others, and an ample dose of plain old rotten luck landed me in an environ in which I never intended to land. Without getting into the gory details, suffice it to say that for me Florida was a refuge of last resort, a place I had visited fairly often (I’d long had family living there) but one which I’d never even considered a spot in which I might one day actually reside. In fact, if asked just a few months before if my living in Florida were even a remote possibility, I would have looked at the questioner as if they were totally insane. I knew on a very basic level that the Sunshine State and I would never make for a comfortable fit, but lo and behold, there I was, an accidental Floridian, ill-suited to the place by any number of measures.

Now, there’s nothing inherently wrong with South Florida; some people find the locale a paradise. I’m just not one of those people. Before arriving in Fort Lauderdale I had spent my young adult years living a quirky Bohemian existence, primarily in Boston but also for a short time in my native New York City. I’d never held a full-time job and had inhabited an eccentric and lively subculture of writers, artists and musicians, or at least wannabe writers, artists and musicians, that formed what sociologists refer to as an urban tribe, with its own customs, values and interests that quite often veered significantly from those of the mainstream.

In both Boston and New York such enclaves were woven into the fabric of city life and like-minded spirits abounded. Fort Lauderdale, though, held little in the way of such a community. Either by nature or nurture (or both) I was temperamentally completely at odds with the place. Whereas I’d always deeply appreciated the muted beauty of a cloudy day, Florida exalts in its status as The Sunshine State. Fort Lauderdale is renowned for its beaches; I detest the feeling of sand between my toes. If Florida is Ying, I am Yang. Despite Zen ideals, this particular combination of Ying and Yang did not produce harmony, but instead a feeling inside me of perpetual discord that eventually led to a crisis of spirit.

Despite my ongoing sense of otherness I remained in Florida for about 10 years, a fact I still have difficulty reconciling, particularly to myself. When I arrived in Florida I was pretty much out of options and had hazy plans of staying maybe 6-12 months. And then I suppose life just took over. I halfheartedly stumbled into my first ever full-time job, working as a low-level video producer for a local cable television company, a quirky enough position in which I had lots of fun but made very little money. In spite of my always feeling like a piglet among puppies I eventually managed to fashion an active social life and find friends and lovers, and though I grew extremely close to some of them, many were quite different from the folks I naturally gravitated to up North. This taught me a lesson that remains one of the few net positives that I took away from my time in Florida: to not prejudge people based on externals alone. Given half a chance, people of all stripes can be full of delightful surprises.

After a few years, my oddball job working for the cable company led to a more lucrative and much more structured position in a marketing company, and that to yet another career builder in an even more stifling corporate environment. While this evolution provided financial comfort, it also shoehorned me into a day-to-day lifestyle that only a few years earlier I had adamantly and vociferously forsworn. At times I barely recognized the clean-cut young man knotting a necktie who looked back at me in the mirror, feeling as if I were living a life deep undercover or, worse yet, as a feckless imposter. Beneath the surface my native eccentric impulses still simmered, but somewhere along the line I had allowed myself to become a passionate man living a passionless existence.

Along the road to this begrudging semi assimilation I lost track of who I once was, the essence of “me” that existed still at the core of my being. This created a spiritual and psychological void that led to terrible cognitive dissonance, manifesting as what I can only describe as a desiccation of the soul. As the years wore on I grew increasingly discontented but found myself caught in a self-imposed catch 22, shackled by the responsibilities of the very lifestyle that was causing me such massive dissatisfaction. The mental blinders I developed in a misguided attempt to stay the course served also to keep me from seeing a way out.

During my last few years in Florida I started experiencing a variety of strange physical symptoms that subsequently turned out to be a subtle presage of the physical crisis to come. Finally, after nearly a decade, the breakup of a long-term romantic relationship provided me with some long overdue escape velocity and I made my way back to New York. Despite the tropical beauty of parts of South Florida, my favorite view of the place turned out to be the one in my rearview mirror.

Arriving back in New York felt like pulling on a favorite pair of well broken-in jeans, once thought lost but happily rediscovered. Before long things started to almost magically fall into place; I reconnected with dear old friends, landed a promising high profile job in a very prestigious but funky outpost of a worldwide mega-media company, and, just a little over a year after returning to NYC, met the marvelous woman who I would eventually marry.

Things seemingly couldn’t have gone much better until – after four years back in New York and just weeks before my first wedding anniversary – the nagging physical symptoms that began back in Florida finally became too pronounced to ignore and I was soon diagnosed with progressive multiple sclerosis. Even though I’d had a sense for years that things weren’t quite right physically, nothing could have prepared me for the maelstrom that would soon erupt within and around me as I was forced into the world of creeping paralysis, once again a stranger in a very strange land, limping down a path for which no roadmap existed. My discarded crisis of spirit was now replaced by a crisis of body.

Despite the best efforts of me and my doctors my disease progressed quite rapidly. Less than four years after my diagnosis I was forced to quit work and go on long-term disability. About a year and a half later I found myself in a wheelchair, the right side of my body withering and my left side beginning to weaken. Quite unexpectedly, these developments allowed parts of me that had been buried for decades to take root and blossom. The gaping holes in my life left by the excision of work and social obligations were soon filled by pursuits and passions that had for far too long been subjugated by the realities and responsibilities of adulthood. Further, my attempts to save my own backside by learning as much as possible about my disease and the ongoing research into treating it injected a sense of purpose and glimmer of light into this murky and frightening new world.

Not to say that my getting sick was in any way fortuitous or – gack! – a blessing. But my increasing disabilities served to strip my life bare as I became less and less able to utilize the trappings of the land of the healthy, rendering an ever-increasing list of everyday objects little or no use to me, luxuries and perceived necessities that had served not too long ago as balms providing superficial comfort and satisfaction, particularly during my wayward days lurching through life in South Florida.

Slowly a curtain of artifice began to lift, and looking at the healthy world from the outside in revealed the synthetic nature of the forces driving most people’s lives; the unappeasable wants and desires conjured by insatiable consumerism, the intentional discontent fostered by a social order that thrives on keeping its populace in a perpetual state of simmering dissatisfaction. During my Florida days these machinations led me down a primrose path, but in my increasingly compromised physical state I began to see with startling clarity that the frenzied world of imposed needs and longings that I once inhabited depends on no thing – no object, person, or sense of self – ever being good enough. No wonder antidepressants are being gobbled by the ton.

Paradoxically, the crisis of body that came all too soon on the heels of my Floridian crisis of spirit allowed that spirit to take root and blossom, freed by unfortunate circumstance to flourish in the absence of any preconceived notions of success and failure. Perhaps the most maddening aspect of this creeping paralysis is that it very likely will never allow me to fully utilize the lessons learned, to put into action in that ever receding land of the healthy the bits of wisdom and insight garnered by being forced to endure what I once believed to be unendurable. Has the experience of prolonged debilitating illness left me unsuited for a life back among the healthy? Now there’s a problem I wouldn’t mind facing, to once again be a stranger in that strange land.

As for the world I now occupy, this truly bizarre land of multiple sclerosis, I intend to always be a stranger within. Although so many of my fellow inhabitants are among the most inspiring people I’ve ever come to know, I will not – I cannot – accept citizenship in this nation. If I was haphazardly thrust out of my element by my never intended move to Florida, I’m a willful alien in this place. No MS green card for me, thank you.

And so I find myself a stranger in two strange lands, the worlds of the sick and the healthy. Maybe it was my destiny to always be the stranger, or perhaps I’m just strange. In either case, vive la diffèrence!

Well, just as long as I don’t have to vive it in Florida…


  1. The ancient Greeks said, "Know thyself". I would like to believe "thyself" would have been discovered without the pain of the monster. I once knew and loved another man who knew himself. He chose to destroy the monster. Your words are beautiful, bittersweet , beyond true. You are no stranger to me.
    Love always,

  2. This is such an amazing post. I kept finding my own life experience in it. But, I also felt sadness as I asked, why is it sometimes necessary to experience desperate circumstances before gaining wisdom or before being allowed to give one's passion permission to thrive? The fact is, had illness not forced me to give up my cushy corporate job, I would probably still be there, discontent and soul deadness and all. I too will never accept citizenship in "the truly bizarre land of multiple sclerosis." Sadly, though, its maws have gripped me so savagely that declining citizenship sometimes seems like a moot point. Yet, I still claim victory by exercising choice where I can. So, whatever sliver of self I can hold on to, I nurture. Whatever new insights about myself I can discern, I cultivate. Certainly, physical capability aside, I like this new person I have become so much more. I am a more well-adjusted, self-realized person, with a greater capacity for enduring joy, than the person I used to be. I wish this realization was always enough, but the longing for my able-bodied self, for that striving, yes, never satisfied self still lingers. It becomes particularly poignant when reminded of what my peers are doing with their lives and careers. Then, I have to talk myself back to a wise place where I can identify the new gifts in my life, like my writing and friends like you. But, it can be an ongoing struggle. Your blog plays no small part in my being able to return to that wise place. Thank you.

  3. I was told not too long ago that I am a nicer and happier person since the monster showed up. I was perplexed by this but do realize it is true. I am not happy about ms at all or the meds or side effects or drs and bills and poking prodding and playing lab rat. But losing so many things I had once taken for granted forced me to open my eyes and be thankful for what I have.

    In the middle of my 30+ MRI scans in first 2 years of diagnosis I was so depressed and so deveastated that this will never go away. I was in a dark cloud throwing a pity party for one. My favorite nurses at the imaging center is one of those perpetually happy people who truely loves life andcould make saran himself smile after 5 minutes of talking gave me some very important advice. She said to me "You can't change the what, or the why, or even the reality. You CAN however change the reaction. You can sit around morning the loss of your body or you can get out there and fight. Only you can control what kind of day you will have. Choosing to make it a good day instead of a bad one takes a lot of work.

    She had a point. She also encouraged me to list 5 things I am thankful for every morning before I got out of bed. Before long that list came natural and set the tone for the rest.

  4. Marc, your written word is truth to me. Probably to many. Write a book, compile all of your articles and publish them. This talent needs more exposure! Well done.

  5. Being diagnosed with a disease makes you change your entire outlook on life. What many can consider as miniscule or unimportant, we can consider poignant and beautiful. Sometimes it takes events like this for someone to realise what's worth considering vital. Excellent post once again Marc, thank you

  6. Marc, your posts always bring me down memory lane. I too think you should write a book've already written a book! I think finding an even larger audience would benefit both you and them. Do you want me to help you? Xoxo amy

  7. My dear friend, as always your writing is beautiful, profound, and touches me. Thank You

  8. Song of the day: Life of Illusion by Joe Walsh. Think I'll name the monster Sully.


  9. Marc. Please think about your stories making a great book. I rarely have words for my feelings. My experiences formed who I am, but words do not relate for me as they do when I read stories like yours. We often learn dire lessons only after the fact. I've learned with MS, most with a positive quality, and which would likely not be learned otherwise. I want to apply those lessons to my being, but thinking so is not making it so. I suffer MS less physically, but more cognitively. I've always had a persistent positive attitude, and understanding more with words will open my life. I also think your stories can relate to those with other illnesses and/or circumstances. You have the ability to touch so many people with how your words describe different subjects and issues with colors which truly relate.
    Thank you for sharing your words and stories.

  10. Marc, as usual, you have hit the nail right down to the boards. I don't know about you, but for me, it was a rare day that learned any lesson the easy way. Usually a telephone pole had to come along and slap me silly before I paid attention. By the time I was Dxd with MS I could catch the lesson faster and that made it easier to find a Happy in every day. Seeking out MS contacts like you and other online buddies has been the great joy of my diagnosis. As they say, "it's a privilege to know ya, kid!"

  11. There are so many lessons to learn from those who are ill. I completely relate to your words and experience, as always. Thank you for once again making me feel just a bit less alone.

  12. As many have suggested above, your essays would compile into a very needed book. Most of the books available that focus on MS are written through the filter of 'Positive thinking will get you through whatever comes your way', without ever saying what will come your way. You, on the other hand, gently tell us what MAY come our way, and how to deal with it IF it does. Such a compendium of writings is out there only on the blog world; and having it in a public library would be better place.

  13. I especially loved this entry. Many thanks for being a voice that reminds me this is not a solitary strugglle. The perspective is so relevant - that ability to step outside of the distorted consumerism of society - MS certainly allows that, and I never put it into words, but thank you for doing just that ! Being forced onto the margins of society creates an oddly liberating worldview, and I like the reality checks in your writing, free of New Age Snake Oil Quackery !

  14. Great post. As my world has shrunk to a microcosm of its former self, I find the tiniest of details so profound and spiritual. Nothing gets taken for granted any more,

  15. As a person relatively newly diagnosed with MS 2 years ago at 55, and trying to hide it so as not to jeopardize my job, your words hold a special place in my heart, helping me to feel less lonely on this rocky road none would choose to travel.

  16. Beautifully presented and written as usual! A bit off subject, what's your take on md1003 biotin for progressive ms?

  17. Sorry for my delayed response to all of these wonderful comments. It's usually my custom to respond to each comment individually, but unfortunately this week I've been feeling especially crummy (related, I think, to ailments other than MS), so I hope you'll forgive me if I simply respond with one comment of my own.

    Thank you for all of the terrific, insightful, and heartfelt comments. MS is certainly no gift – at least not a gift I wouldn't gladly return – but, as with any experience, the MS experience does offer opportunities for learning. As the disease whittles away at our bodies, it also lays our souls bare. In doing so, it opens us up to self insights that otherwise would remain hidden, at least without years of psychotherapy. It gets to the essence of the person, and there is much value to that. Whether or not this self-knowledge is worth the physical toll the disease exacts is not for me to say. The price is steep, and a commodity that can only be valued on an individual basis.

    As for all of you urging me to gather these essays into a real-life book, I'd love to. If anybody has any literary connections, please let me know, as I am a bit stumped as how to actually go about the publishing process. I do appreciate all of the encouragement.

    Oh, as for the biotin study, I am intrigued and very hopeful about what I've read so far. We should learn more later this week when the full study is presented at the neurology conferences. The preliminary reports I've read offer much reason for hope…

  18. I am so blessed to get to know you though your blog and now I am proud to know you. This was a powerful, honest and moving post and I humbly thank you for writing it. You are in my thoughts...

  19. I always enjoy your blog and I just came across this Edna Farber quote and thought of you. "Life can't ever defeat a writer who is in love with writing, for life itself is a writer's lover until death - fascinating, cruel, lavish, warm, cold, treacherous, constant". I've read enough about you to know you were never this type of "art is all" writer and that you have a wife whom you love dearly but I do feel you are gifted as a writer and that it is a gift that should keep you going.

  20. I've read 2 or 3 of your posts in the last couple of days & I am amazed at how compelling your essays are...I am hooked. Diagnosed 2004